Putting profits before patientsLast Updated:
Ask any cluster headache patient and they will tell you that health insurance companies rarely cover the cost of oxygen. It is baffling why such an inexpensive, safe, effective treatment is denied. Most of us have learned to work around this issue by paying for tank rentals out-of-pocket or making arrangements to use welder’s oxygen. I’ve never needed to source welder’s oxygen because I’ve always had access to affordable tank rentals from understanding DMEs. That all changed last week.
A few years ago I had to find a new oxygen supplier because of a move. At the time, there was only one preferred provider on my health insurance plan. That provider was Apria Health Care. Initially it seemed like a good move. I had chronic cluster headaches and attacks were hitting 3-5 times every week. Apria delivered 6 “E” tanks and my insurance covered the cost. A year later, my insurance provider changed to a Medicare Advantage plan with Humana, which does not cover oxygen for cluster headaches. I had emptied 5 of the 6 tanks, but didn’t bother to reorder. In early 2015, Botox treatment put me into a 7-month remission followed by brief cycles just 3 times a year. I really didn’t need that much oxygen anymore. Based on previous experience, I assumed I would be able to rent tanks when needed without any problems.
Fast-forward to October
When we moved into our new house last October, I called Apria to request a pick-up of the used tanks and to change my address. Because my cycles are brief, I do not require a large quantity of oxygen. That last “E” tank got me through 3 attacks on Veteran’s Day. I had just enough oxygen left in the tank to treat one more attack.
Knowing that the next cycle would be coming soon, I requested a new delivery last Tuesday. At the time of my request, I was informed that they had no record of me as an oxygen patient. I assumed this was a clerical mistake and asked my neurologist to contact them with a new prescription. As luck would have it, my next cycle hit before the tanks could be delivered. I used the last bit of oxygen and prayed the next round would wait until new tanks arrived the next day.
It was a Friday morning when I called Apria to find out when the tanks were scheduled to arrive. That is when I was informed they were waiting on my doctor to fax them the results of my oxygen saturation test. The next cluster attack was beginning to ramp up, so I was already on edge, impatient, and beginning to panic. I needed that oxygen right away! I argued with the person on the other end of the line, demanding to know why in the world O2 sats were needed for a neurological condition that had absolutely nothing to do with lung function. All I got in response was a terse, “That’s what your insurance requires.”
Sharp stabs seared through my right eye as I fastened an ice pack tightly in place with an ace bandage. I could feel the adrenaline coursing through my body. Involuntarily, I began pacing the floor and taking quick, shallow breaths. Desperate, I dialed the number of my care coordinator at Humana hoping she could help expedite the oxygen delivery. My bad luck turned worse when I learned that she was out of the office. All attempts to reach anyone else who might be able to help resulted in being transferred from one extension to another until the call was eventually dropped.
Burning tears were streaming down my face as I desperately dialed Apria once again, hoping to speak to someone with just an ounce of sanity and compassion. By this time the pain was so intense that I had lost all ability to remain calm, rational, and diplomatic. The call was an epic failure. It was time to get my husband involved. The minute he picked up the call, he could hear the panic in my voice and knew I was out of my mind in pain. “I’m on my way,” he reassured me.
In the minutes after that final call, I could feel the beast loosening its grip on my head. Taking in a deep breath, I realized the attack was beginning to subside. My head now hurt from the migraine that always followed a cluster attack, but at least I could think a bit clearer. I mentally assessed the situation.
- No one at Humana could help.
- My neurologist was out of the office for the weekend.
- I had one more option. Maybe my primary care doctor would help. If I could find another DME who was more sympathetic to cluster headache patients, perhaps he would be willing to order a small amount of O2 to get me by until my neurologist was back in the office on Monday. I called the office and spoke to his nurse.
By the time my husband arrived home he was able to take over. He grilled the new DME to verify there would be no problems with them accepting payment, then made arrangements with my doctor to have a prescription faxed to them. Within the hour he was able to pick up 2 full “E” tanks for a meager $24.
It’s now Monday morning. I’ve been on the phone with Humana, Apria, and my neurologist. Humana says that as a Medicare Advantage plan, they do not cover O2 for cluster headaches. I knew that and wasn’t surprised by their answer. That’s what I’d been telling everyone at Apria all along. Apria says they made a mistake and that Humana does cover oxygen for cluster headaches, BUT…they never accept direct patient payments, AND…they rent their tanks for $100 per month. If by some miracle, Humana did agree to pay for the tanks, I’d still be out $20 every month PER TANK just to have the damn thing available “just in case”. Now why would I agree to that when I just paid a ONE-TIME $24 fee for TWO “E” tanks that I can keep as long as needed until they run out?
Fired due to incompetence and woeful lack of compassion.
Apria has made a business decision to put profits and bureaucratic “red tape” before patient care. This is unacceptable. Before I hung up, I told them their customer service SUCKS and that as a headache disorders patient advocate, I’d make sure every cluster headache patient I knew would learn how TERRIBLE they are. I promised to do everything in my power to make sure they never got another DIME from any headache disorders patient. There’s only one way to teach these money-grubbing bastards a lesson. BOYCOTT Apria, file complaints with your insurance company, and tell everyone you know that they are NOT cluster headache friendly.
Cluster headache-friendly DMEs
On the other hand, I’ve discovered two marvelous DMEs who understand cluster headache patients and will bend over backward to accommodate our needs. If you are in northeast Kansas and need oxygen for cluster headaches, please do business with LinCare, Inc. or Criticare Home Health Services, Inc. Not only will they offer you affordable O2 tank rentals, but they will outfit you with regulators, masks, carts, and anything else you need AND teach you how to use the equipment for maximum benefit.